Rede de cuidados e estomia: caminhos e desafios para a inclusão do paciente no Sistema de Saúde

Abstract

This study aims to understand the networks established by a person with an elimination stoma regarding self-care and access to health services. It is an exploratory, descriptive case study with a qualitative approach, conducted using the "User-Guide" methodology at a Specialized Rehabilitation Center in Manaus, Amazonas. Participants included a user with an ileostomy and members of her formal and informal care networks, such as family members and health professionals. Data were collected through semi-structured interviews, which were subsequently transcribed verbatim and subjected to thematic analysis. The results showed that the participant's care trajectory was supported by the coordination between formal and informal networks; key elements for developing autonomy in managing the stoma and collection bag included multidisciplinary follow-up, support from an enterostomal therapist, appropriate referrals, and continuity of care. The family network proved essential for emotional, material, and financial support, especially given the stoma's impact on daily life—including changes to routines, work, social life, and emotional health. Challenges were also identified regarding the centralization of specialized services, travel requirements, financial difficulties, and the need to relocate to a different municipality to continue treatment. The study concludes that care networks play a fundamental role in adapting to life with a stoma, fostering self-care, therapeutic continuity, and quality of life, while highlighting the need to strengthen the Health Care Network to reduce access barriers and promote comprehensive, humanized care.